Several floors up, fire alarm sounds – but you have mobility problems


Picture the scene. You are several floors above ground and the fire alarm sounds. You have not been informed of either a drill or a test and, so, the instructions are: evacuation.

Just one problem, you have mobility issues. You either use a wheelchair or can on walk down the stairs with great difficulty, in pain, and very slowly.

evacuation

Laura Kolaczkowski.

I was reminded of this situation by an article headlined This is Not  Drill, Maybe written by Laura Kolaczkowski, published by MultpleSclerosis.net. Laura is very well respected within the MS community in the USA. Also, she was one of my top columnists during my time as managing editor (columns) with BioNews. Let’s let her set the scene:

A recent event in a very tall hotel left me wondering why I was so hesitant as to what to do. It happened in Nashville, at the Omni Hotel, which I was staying at for the Annual Consortium of MS Centers meeting. The day I gave a presentation at 7 AM left me tired, and I returned to my hotel room early afternoon to take a brief rest.

I had just dozed off, slipping into a much-needed nap, when the emergency fire alarm rang. At first, I thought let’s ignore the blasting noise of the siren in my room. Perhaps if I pull the pillow over my head I can pretend this isn’t happening. Alternating with the alarm noise was a pre-recorded message ordering me to leave my room immediately and to evacuate the hotel using the closest stairway and a reminder that the elevators would not be operating.

Ignore the warning?

Having worked in schools for over 25 years, I don’t underestimate the importance of fire drills, but this time I was hesitant to evacuate the building. Why would I ignore this warning? Simply put, I was going to have to navigate the stairs, and a lot of them.

My room was on the 22nd floor, and I was immediately cursing my misfortune of having returned to the hotel instead of remaining at the conference, and my even worse luck of having MS and mobility issues. As I lay on the bed listening to the alternating message of pending doom to evacuate immediately and the ear piercing siren, I could only hope it would soon stop and it would be declared a false alarm. Alas, such was not the case, and not wanting to be the headline that read Woman Perishes Because She Ignored Warnings, eventually (as in about five minutes) I did the adult thing and made my way to the stairway and began the long descent to the ground level.

About the only touch of luck in this episode was the stairway was rather narrow, with a handrail on each side that I could grasp with both hands. There were few people in the building because this was mid-day, but most of the few folks who came behind me were kind enough to slow and ask if I needed assistance. Or maybe they just slowed because I had to let go of one of the handrails so they could pass.

No smoke or stampede

Smelling no smoke and not hearing a stampede of firefighters coming up the steps to rescue us gave me confidence that this was not a true emergency. and I told these folks to go on ahead. Telling them I would be fine, but I didn’t mind if I died alone in the stairway because I had lived a full life. A few caught the wry humor, but most were busy saving themselves and just went on their own way.

I remember similar humour a considerable number of years ago. The fire alarm sounded in our office block, but instead of an orderly evacuation, staff members were just standing around looking confused. Someone volunteered the information that we were waiting for admin department to confirm whether it was a real emergency. “Meanwhile, we can all burn to death,” one senior manager commented.

Back to Laura:

I survived the alarms and the stairway but heard from my family afterward that I did the wrong thing. They swear I should have called the front desk and asked for assistance to leave the building. I tend to be a bit more independent-thinking than this and it never occurred to me that there must be evacuation plans and assistance for people with mobility issues.

Lisa and I have enjoyed a number of cruises together and their emergency drills don’t tend to cater for those of us with disabilities. However, we were assured that they have special wheelchairs designed for going downstairs. Great to know they have plans to help the evacuation of people with mobility difficulties.

evacuation

An example of an emergency evacuation wheelchair. (Pic: Stlfamilylife.)

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Invest more in innovation and development say wheelchair users in international study

Millions of people have lower-limb paralysis – the most common causes being strokes, spinal cord injury and multiple sclerosis.

Now, users of wheelchairs and other devices to assist lower limb mobility say they need more money to be invested in innovation and development. And, as a wheelchair user, I agree totally.

innovationThis is the result of an international study of wheelchair users across the UK, USA, Japan, Brazil and India. It was carried out by ComRes on behalf of the Toyota Mobility Foundation.

Key findings include:

     Nine out of 10 (89%) wheelchair users experience pain as a result of their mobility device;

       Nearly a quarter (23%) say they have been declined entry to public transport because of their mobility device;

       43% say they have been unable to find an accessible toilet when they needed one;

        30% of say they have felt frustrated because the design of their mobility device felt outdated.

The study also found that wheelchair users experience repetitive strain injury (RSI) and pressure sores (29% and 22% say this respectively).  

The survey found that nearly a third (30%) of wheelchair users say they have felt frustrated because they design of their mobility device feels outdated.  The top five improvements that would be most helpful to them, they say, are to enable them to:

      move around faster (41%);

        perform regular day-to-day tasks more easily (37%);

        feel more relaxed & comfortable with a device that feels more natural and like an extension of themselves (37%);

        feel more confident and able to socialise and meet with friends (34%);

        feel a sense of spontaneity, freedom and independence (32%).

Innovation: Where we go from here

People with lower-limb paralysis are now being encouraged to take part in a global conversation about the types of mobility technology innovations they would like to see, using the hashtag #MyMobilityUnlimited.  

Toyota Mobility Foundation’s director of programs Ryan Klem said: “This research expresses the urgent need for innovation in this area. It’s surprising that with all the technology we have today, we still have people in constant pain as a result of their mobility devices. The comments we are receiving through social media show the kinds of developments that people want to see, and we hope the Challenge will result in genuinely life-changing technologies.”

Nesta Challenge Prize Centre’s Charlotte Macken commented: “While the focus of this Challenge is lower-limb paralysis, we absolutely do expect that the technology developed as a result will be transferable and have the potential to improve the lives of a much wider group of people. This Challenge is about achieving impact, and for that reason, we needed to narrow the focus. However, we recognise that people have a wide range of mobility needs and hope to be able to help them too.”

For more information please visit mobilityunlimited.org

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stat

Adapting to a new normal in our lives

Normal. Just what is it? Is anything or anyone really normal? I often say that I have never pretended to be normal and, while said light-heartedly, there is more than a grain of truth there…for a variety of reasons.

We all have our ow normal. But, the main reason I’m not everyone’s idea of normal is that, like many others, I have a chronic disease. In my case, it is multiple sclerosis.

new normalWhatever the chronic disease we each have, we are not like others. Whatever our life was before the onset of the illness, there are things we can no longer do anymore. That, however, is not to say we are abnormal. What it really means is that we have to adapt to the new normal in our lives.

Actually, it means that often we have to adapt continually as the supposed new normal is surpassed by another.

MS affects my left side primarily. It causes weakness in my leg, dropfoot, arm, and hand. It affects my ability to walk, to keep my balance, to hold anything in my left hand. Even writing this, I can only use just one hand, my right obviously, to type.

Adapting to mobility problems in stages

new normal

The lightweight folding electric wheelchair that I use today.

At various times in the last 16 years, my new normal has included walking with a stick, then a rollator.

This was followed by a heavy self-propelled manual wheelchair, followed by an electric wheelchair and lastly, I am now using a lightweight folding power chair.

The good news is that I can load the newest chair into, and unload out of, my car – by myself. And that means I can go anywhere alone, if need be. That is independence.

Eating has to be done using just the one hand, and Lisa is happy to cut the meat into mouth-size portions that I can pick up with a fork.

Washing dishes, I can just about complete, as long as I can do it using just one hand. That’s no easy task but it’s well worth the effort.

All of these things are my new normal. As with everyone in a similar position, they didn’t all come at once. It’s all about adjusting, one step at a time.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Mobility scooters: A question of cruising

Cruise lovers have widely differing opinions about the use of mobility scooters on board ships. And that affects everyone with mobility difficulties, whether caused by a disease such as multiple sclerosis, injury, or even aging.

Their views are included as comments on a story appearing on cruise.co.uk website. They vary from calls for mobility scooters to be banned to criticism of such opinions, and points in between.

mobility scootersThe main problem seems to stem from a perception that some people choose to use scooters even though they do not have a mobility issue.

Cruise companies comply with disability equality laws and have their own accessibility policies. That’s why mobility scooters and wheelchairs are widely allowed, although individual cruise lines may have their own restrictions.

Some comments were against mobility scooters:

Jeanette Webster: They shouldn’t be allowed on cruise ships they take up to much room,plus they drive them to fast without care for others.

I have to disagree with a ban but mobility scooter users must do so with care and consideration for others.

Angela Hobbs Clarke: Why should we be inconvenienced by them? We pay a lot of money to cruise, and to be able to move about the ship without large scooters being parked in the halls. How would these disabled people get off in an emergency, and how would we able bodied passengers navigate round them in the dark.

Inconvenienced? People who NEED to use scooters are still people. They should be given access and treated equally. That is their legal right.

Paul Lavin: They are a lethal weapon they should be totally banned everywhere. People with genuine mobility problems should use a conventional wheelchair.

What a disgusting attitude. Everywhere? Really? Lethal weapons, indeed! And as for using a conventional wheelchair, what if they can’t use one? Maybe they are alone and don’t have the strength to get about unless someone pushes them?

Carol Hunter: We went on a cruise in May and there was a man driving round on his mobility scooter, making everyone get out of the way. In the evening, he would park it at the side of the dance floor, get up and have a dance with a few ladies. He’d then get back on his scooter and drive off!!

If this is true, I find such behaviour deplorable. From what Carol says, it would seem this scooter user’s mobility problems are not genuine.

Others spoke in defence of scooters:

Janice Derose: Why not? I’ve been on several cruises, no problem at all with them (scooters). People need a holiday, they shouldn’t need to stay at home just because people like you can’t show empathy. None of us are out of this world yet, maybe we should start saving for one.

Fair point.

David Haverty: One day you may well need one. Will you want to give up cruising? I don’t have one and don’t anticipate needing one in the foreseeable future, but feel compact scooters should be accepted, even if with restrictions on cabin choice or total number of scooters on board.

I agree, on both.

Diane Roe: I don’t drive too fast without a care for others. In fact, over the last few years I have noticed more ignorant able-bodied people who push in front and block the lifts, it works 2 ways!!

Scooter users who have disabilities are mostly accompanied by someone walking, so driving the scooter at walking speed is the norm. It’s true about the lifts/elevators. Able-bodies people can use the stairs, scooter users can’t.

Maralyn Lord: Anybody that says no – I hope that one day they don’t need them (mobility scooters) because whoever is using the scooter, the person with them is usually able to walk. Should they be denied a holiday on a cruise ship? Anybody who says yes (they should be denied a cruise), I hope that they never need to use one. Life is not easy. Should we stay at home because it causes a nuisance to people more fortunate than ourselves?

No one should be forced to stay at home and forego a cruise holiday just because they have reduced mobility and use a scooter.

And finally…

Janet Bottomley: My father takes his mobility scooter but only uses it when he goes ashore. He walks with a stick aboard. And if they only allow scooters in adapted cabins it naturally controls how many are on board.

Great that he’s able to do that.

I have cruised, successfully, using both a manual wheelchair and a scooter. Next time, I’ll will use my folding electric wheelchair that I am confident will give me the best of both worlds.

Happy cruising to all.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

 

Mobility aids: Choose what’s best for you

Mobility – well, truthfully, difficulty in moving around, is something that many of us with multiple sclerosis and other disabilities must overcome.

And, for our benefit, there are numerous mobility aids on the market for us to choose. These vary from the basic walking stick, or cane, right up to the top of the range, road ready, electric power scooter.

But I want to talk about some options between those two extremes. Yes, I will restrict my comments to walkers, rollators, manual wheelchairs, electric wheelchairs, and electric scooters. You see, except for walkers, I have experience using all of them.

Standard walkers are stable, and have sturdy metal frames providing solid support. Upper body strength is required as the user lifts it off the ground every couple of steps.

Wheeled walkers have two wheels and two standard legs. This is easier to move as  the user only tilts it forward to move.

Three-wheeled rollators are ideal for using where space is limited but they don’t have facilities like a seat.

Four wheeled rollators, with two ‘steering’ wheels at the front are easy to move and have seats to use if a rest is needed. They also have baskets or other carrying capabilities. Bakes are important, especially when going up or down slopes. They can also be locked on to hold the rollators still so the user can sit safely

Manual wheelchairs come in two basic types, one where the user has to depend on caregivers to push them about. The other is where users can move themselves using the large wheels that can be self-propelled.

Electric wheelchairs add to users’ independence but are usually heavy and  need wheelchair adapted vehicles to move them about. But now there are folding electric wheelchairs that can easily fit in ordinary carsElectric scooters are available in different sizes. They also improve independence and the smallest ones can be broken down into a number of pieces to fit into cars.

I tried a self-propelled manual wheelchair from Drive Medical but found it was little use to me as I only have one good arm, so still had to rely on Lisa to push my chair. Not that she minds, but it does nothing for my independence.

Three different scooters have been tested. One was too lightweight in terms of power. One was powerful enough but just too large, and the third was just too much to break down to pack away and then reassemble to use again.

A power wheelchair came next. And that was great but it was so heavy to unload from and reload into our seven seat vehicle.

Rollators and wheelchairs

independence

Next I bought a great foldable electric wheelchair from Better Products for Disabled People – and it is wonderful. It’s so much lighter than an ordinary chair but it is still too much to unload and reload a number of times in quick succession, or if it is only for a short period of time.

rollatorsSo, this week I took delivery of a brand new four-wheeled rollator from Performance Health (formerly Patterson Medical). My verdict? It’s fantastic and yesterday it enabled me to walk to my maximum limit of about 20 yards before I sat on the built-in seat for a few minutes.  Then I got up to walk another 20 yards.

It’s easy to get out of and back into our car. Of course, for longer distances, I will continue to use my trusty wheelchair.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

Hotel group bans disability scooters

Disability scooters parked on the pavement.

Disability scooters parked on the pavement.

Able-bodied people are being blamed for hiring and misusing mobility scooters leading to one of the leading hotel chains in Benidorm, Spain, to ban the scooters that are essential mobility aids for people with one or more of a whole range of disabilities.

As I live with multiple sclerosis and use a powered wheelchair, you will understand that this caught my attention.

According to Benidorm All Year Round website, “there is a local bylaw which forbids rental companies from hiring them out to under 55s with no disabilities, they are obviously flouting this.”

Hotel Castilla, one of Servigroup's nine hotels in Benidorm.

Hotel Castilla, one of Servigroup’s nine hotels in Benidorm.

Xavier Gil is Operations Director of Servigroup which has nine hotels in the area. He said: “We have nothing against people with disabilities and all our hotels are adapted to accommodate people who are less mobile. All public areas are accessible, with ramps leading to the bars, restaurants and pool areas in addition to specially adapted rooms for disabled guests.”

Wheelchairs are still allowed for guests that have mobility issues but those chairs must be stored in their own rooms.

Mr Gil added: “The situation with regards to mobility scooters has got totally out of hand and we have had to take action following numerous complaints from other guests – primarily for safety reasons.

“The sheer volume of scooters left in the lobby and reception areas are causing serious problems for both staff and guests, with anywhere in the region of 25 scooters obstructing passageways and exits. There have been countless accidents, with glass panes broken and furniture frequently damaged – and they are running out of room.”

Some tourists with mobility problems genuinely rely on the scooters and feel outraged by what they feel is discrimination by the hotel group. Others agree that there is a problem that needs to be addressed, not just in hotels but in Benidorm itself, one such person said: “This is about the able-bodied hiring scooters when they shouldn’t be using them.”

When asked if other hotels are likely to follow Servigroup’s lead, Antonio Mayor, President of HOSBEC – the local Hoteliers Association that represents 88% of the hotels in Benidorm – said: “No, I don’t think so. We will open our hands out to those guests as it is a necessity for many.”

Interestingly, Servigroup is not a member of the association.

The streets of Benidorm are similarly affected. A Benidorm All Year Round report says: “Only this weekend I saw so many young able-bodied joyriding on them. I can testify that there was nothing wrong with one pair of lads, as I saw them jumping off and on a double scooter.

“But it is not just the young, the over 55s are just as guilty. I have had to walk onto the road many a time to pass as they have been parked up outside bars and cafes, clogging up the pavements.”

I wonder if Benidorm is the only holiday resort that has an issue with the use and abuse of mobility scooters. Do you know of any others?